When I was diagnosed with H-EDS the Rheumatologist said I had “mildly stretchy skin”.  Until then I’d had no idea my skin was any looser than other people’s and I came home and asked everyone I knew to pull their skin out to see how elastic it was compared to mine 😉 .

My friend Jane (who also has H-EDS, Dysautonomia and severe M.E. – considering these diseases are “rare” there are a lot of us around!) recently asked me to show her my stretchy skin so that we could compare notes.  So I thought I’d post some pictures online, so that you could compare notes too!

Photo of stretchy neck skin

Stretchy neck skin

photo of stretchy hand skin

Stretchy hand skin

Photo of stretchy elbow skin

Stretchy elbow skin

As well as stretchy skin, I have very soft skin which feels beautifully smooth and quite velvety to the touch.  It is very thin though, and I wish I had shares in Germolene and Elastoplast the amount of cuts, tears and grazes I have on an almost daily basis.  I gave up a lonnng time ago trying to brush my teeth without my gums bleeding: not through disease but through fragility.  I’ll probably end up a tooth-less old spinster with a mouth full of dentures!

I have, though, what is termed ‘dirty elbows’, ie patches of pigmented skin.  The skin isn’t thick or dry, just dark brown.  No clue why, but here’s a photo just in case you can shed some light!

Photo of 'dirty' elbows

‘Dirty’ elbows

On the up-side, I’m constantly told I don’t look my age (currently 45, eek!) and if I ask people to guess they usually place me at mid-to-late thirties  (they’re probably just being polite and lying through their teeth, but at my age I’ll take all the lies I can get 😉 ).

Not only do I have thin skin, I also have incredibly thin/fine hair (literally like baby hair) through which you can see my scalp, and thin nails which split and break so readily I’ve never had a decent talon in my entire life.

I’ve also always scarred easily, from very minimal trauma.  As a toddler, I was playing with my little next door neighbour who accidentally scratched my face with her nail.  I’ve had a scar on my cheek ever since.  And the scar I was left with after my spinal surgery I call “the zip”, because that’s just what it looks like, having a wide centre, and staple lines either side :-/

Photo of a Laminectomy scar

Laminectomy scar (now 30 years old)

On the whole my skin doesn’t cause me any serious problems, for which I’m very grateful.  If you know any decent wig makers though, do let me know 😉 .

10 thoughts on “Skin

  1. zebraboo

    Ohhhh I thought it was just me with the hair! I have been told I have ‘diffuse alopecia’ but I’m sure it’s just EDS and maybe a POTS blood supply thing. Baby thin. Wispy. Scalp shining through all over the place. I’ve never had a ponytail thicker than a pencil, ever!

    Does yours ever fall out in big bouts? (Or maybe they’d be small sheds to a normal person ..!)

    The skin looks very familiar too, although your neck is stretchier than mine!


    1. bertieandme Post author

      When I was really ill with M.E. my hair came out in handfuls 😦 . I do still shed a fair amount of hair (can’t believe how much is left in the bath lol!), which is a sod because it’s not like I have loads to give away! x


  2. Ashri

    Oh god, I ‘m very nervous… I think, I have every single symptoms alike… what should I do?? however.. it’s amazing finding your web, giving me very much answers. Thanks


    1. Jak Post author

      Hi Ashri

      I’d suggest you find a specialist if you think you have EDS and get a proper diagnosis. There are lots of different connective tissues disorders and diseases which share similar symptoms. Wishing you well. Jak


  3. debsypepsi

    I have a question. I have the same skin symptoms as you. I look also young, aged hands, stretchy etc I am 38 years.
    But what I am very worried about what I notice all of a sudden is that if I slide over my skin it all crinckles up, if you know what I mean. It folds up. As if its not attached to the muscles/skelet/underlying tissue..
    Do you have that also?

    Kind regards


    1. Jak Post author


      My skin is very loose and wrinkly when pushed but it’s not something which worries me. If you have concerns about your skin issues and think you might have Ehlers-Danlos Syndrome I’d suggest a referral to a geneticist or rheumatologist.. Classical Ehlers-Danlos has more skin issues than Hypermobile EDS but less hypermobility.



  4. debsypepsi

    Hello Jak,
    Thanx for your comment.
    I didnt know I had this until I had a bad reaction to a microneedling session and my skin became more loose. (My vanity was punished I guess and I really hope it heals considering I might have a collagen defect). With microneedling they make little holes with tiny pins on a pen and it has to stimulate collagen and make your skin younger/stronger. Well it didnt..I did this treatment before with no side effects, and I really wonder why if I have EDS why not having this side effect before. (stress?) Only the last time (oktober) I was in a period of emotional stress. And since august I had also my joints constantly cracking and popping and also had to pee all time and had no bladder infection. I wonder if the stress tured something on..

    I never noticed before if my skin was stretchier dan others, I could do strange things likeputting my skin above my knee over my knee but I Always thought it was the lipedema On a EDS forum I saw a skinny man doing that also. I saw your blog and saw your simular photos I have, well she did not treat my neck with this pen device. On OHTWIST I found a list with symptomes and all I have and ever had was in that. (lipedema/raynaud/PCOS/poor blood circulation/dizzyness, receding gums) . Luckily I have never pains and no indeed I am not hypermobile..I went to a doctor but didnt take it seriously. And he said I dont think its worth it because genetic testing is expensive. So I guess I have to invent the wheel myself with help of you people have this amazing informative blogs.

    For the hairs I have a tip for you which made my hair thicker and fuller.
    You have one cup of nettle and horsetail and throw 1.5 liter cooked water and stay overnight and strain it the next morning and you can put it in the fridge for a few days and drink.Its also good for overal health.
    Good luck to you! (sorry for grammar I am from the neteherlands)


  5. Araya

    I didn’t know my skin was considered stretchy until seeing these pictures. I assumed everyone could stretch their skin like that. My elbows and eyelids are both discolored (brownish yellowish). I don’t know what it is that causes it. It’s so cool to see someone else that has flexible joints and skin like me!


    1. Jak Post author

      Isn’t it wonderful when you see other people like you and it all just clicks into place? 🙂 I didn’t know I wasn’t normal either because my Mum has hEDS so it was normal in my family! Jak x



Leave a Comment

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.